Peter Limbrick writes:
An international group has written this Guide in the form of letters to parents and professionals to introduce key experiences faced by many families and to highlight their needs.
It offers antidotes to excessive stress and strain in children and families. The Guide is intended to open conversations between parents and professionals on subjects they might not otherwise discuss.
Anne Emerson, Associate Professor in Special Needs Education, University of Nottingham, writes:
UKWhen a baby is identified as having disabilities or complex and long-term health conditions their parents experience a range of distressing emotions which can include trauma. They may be told that their child will not achieve any independent skills or even that their child's life is in danger. However empathic the health professionals who deliver this news it still comes as a shock and can be catastrophic.
From this point family life is over-turned, it impacts on the close and extended family, often breaking natural support systems. Parents can feel helpless and hopeless which may impact on the bond between themselves and their baby. Most of all they often feel isolated, particularly when they do not know of anyone else who is in the same situation.
Research has shown that services are generally poor in meeting the needs of these families despite the numbers of health professionals who can be involved. Families report the need to manage multiple appointments and relationships with professionals. Ironically, some families find the professionals who are there to support their child inadvertently make life harder for parents and families.
An international group has written a guide in the form of letters to parents and professionals to introduce key experiences faced by many families in this situation and to highlight their needs. It is intended to help professionals think through the issues the families may face, and to develop a holistic view to the family needs. The specific need for systemic change to offer keyworkers and to utilise the Team Around the Child approach is highlighted.
The following people have helped to write this Guide:
Sue Boucher, Director of Communications, ICPCN
Patricia Champion, Clinical Director Emeritus, The Champion Centre, Christchurch New Zealand
Anne Emerson, Associate Professor in Special Needs Education, University of Nottingham, UK
Deborah Fullwood, Independent Consultant, Australia
Peter Limbrick, International Consultant, Interconnections
Denise Luscombe, Paediatric Physiotherapist, National Executive - Early Childhood Intervention Australia
Luisella Magnani, Professor of Linguistics and Aesthetics, University Institute in Sciences of Linguistics Mediation of Varese, Italy, Catholic University of Milan, Affiliation with the University of Studies of Insubria of Varese, Paediatric Clinic
Lorna Montgomery, Manager, Infant and Child Development Services Peel, Canada. Sadly, Lorna passed away while the Guide was being written
Annemarie Sims, Occupational Therapist, Evelina London Children’s Hospital, UK. Previously of Infant and Child Development Services Peel, Canada
Rachel Tainsh, Project Coordinator for Mellow Parenting, UK
Gill Thomson, Senior Research Fellow, Maternal and Infant Nutrition & Nurture Unit, University of Central Lancashire, UK.
We have been encouraged and supported by:
Petra Burger, South Africa. John Callanan, Australia. Julia Downing, UK/Uganda; Andrea Green, UK. Tom Laverty, UK. Joan Marston, South Africa. Julie Revels, UK